Taking steps towards Rett syndrome awareness

Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year. On October 22, families from around Massachusetts came together to climb the steps of Gordon Hall at Harvard Medical School to symbolize their daily struggle and hope for the future. A few of those families share what Blue Sky Day means to them. 

Woman with Rett syndrome and her dad pose with a clown
Larry Fallon with daughter, Jordan, age 28

“I’m thankful that Jordan’s still mobile and can climb the stairs with a little assistance.” — Larry Fallon

Family of girl with Rett syndrome on Blue Sky Day
Geoff and Jenney Gillard with daughter, Sammy, age 10

“What I like most about Blue Sky Day is that it’s a great opportunity for our community to get together to support one another, but also to celebrate the hope we have for research and curing Rett syndrome one day.” — Geoff Gillard

Mother and her daughter with Rett syndrome post on Blue Sky Day
Ariane McMahan with daughter, Keilly, age 18

“Blue Sky Day  is a great opportunity for us to get together with our Rett community. We get to see faces that know our story and travel our path because it’s a unique journey. Climbing the stairs is really like the challenge of the Rett syndrome life.” — Ariane McMahan

Mother and teenage daughter with Rett syndrome pose by stairs on Blue Sky Day.
Maggie Dennis Wurm with daughter, Madasyn, age 17

“Blue Sky Day represents not feeling the loneliness that you feel when you’re taking care of a family member with Rett syndrome. We’re in it together. Climbing the steps symbolizes that anything is possible.” — Maggie Dennis Wurm

Parents sit on stairs with their daughter who has Rett syndrome.
Elaine and John Costello with daughter, Danielle, age 33

“It’s nice to see that people are really thrilled when their child gets up the stairs. Everybody cheers for them and that’s really a good feeling. It’s a really nice, supportive day.” — John Costello

Learn more about the Rett Syndrome Program.